Monthly Archives: March 2006

Liam Byrne, the health minister, said that 6,170 children under 16 had
been diagnosed in England last year, compared with 3,100 in 1997-98.
The number of cases including adults rose from 4,220 to 9,170 in the
same period.

So autism diagnoses for children have nearly doubled in 8 years from 3100 to 6170. Meanwhile adult diagnoses have nearly tripled in the same period from 1120 to 3000.

So have we got an epidemic of regressive autism in adults or have I found the hidden horde?

PS

I have been googling away trying to find the source of these figures with no luck so far. But Liam Byrne is a health minister in Tony Blair's government and the Telegraph is a respected national paper so I think the figures are reliable.

I am in a hotel lobby using a local wi-fi connection that does not like Firefox or Blogger. So I am responding to Joseph’s latest offering on the Geiers here. Please read the original.

This is all to the good. But I must point out that all this does is debunk the Geiers’ evidence for an epidemic linked to thimerosal in vaccines.

We must still be open to the possibility that there has been an increase in the incidence of autism and that environmental factors may be involved.

My reason for wanting to defend the environmental element to autism is to counteract those (eu)geneticists who hope to offer a genetic test for autism while ignoring the impact of the environment on outcomes for autistic people. Abortion is cheaper than social reform :-(

I think that there needs to be more emphasis on the important distinction between *handicap* and *impairment*. That distinction allows us to examine — and mitigate — that part of disability that is socially constructed, via change in the society, while not losing count of the part of disability that is physical and intrinsic. On the contrary, keeping the distinction between handicap and impairment in mind allows us to better identify and mitigate impairment that is truly intrinsic and truly impairment, as such.

I recently watched a video of the recovered children on parade at the 2005 DAN! Conference in Long Beach. It was obvious to me from their manner and the way they talked to the host that some of these children were autistic. With the others it was impossible to tell. The parents were convinced that their children were “recovered” from autism. So were the audience. These children were better. But how much of it was the relief of extrinsic impairments?

My take on this is that these parents do not distinguish the extrinsic from the intrinsic. They see autism as an extrinsic thing – brought on by vaccines or allergies or some other environmental insult. They are not alert to the possibility that autism is intrinsic to their children and that the environmental events that impact on their children can be quite subtle. They are the sort of parents I had in mind when I wrote about ‘miracle cures’ in my book.

Children with Autism typically inhabit a world of chaos, our world. Their impaired ability to share in our common sense interpretation of experience leads them to impose their own uncommon sense of order and meaning. This can lead them to act in ways that are quite at odds with our ideas of appropriate behaviour. So we cajole, threaten, plead and generally respond in ways that add to their confusion and confirm them in their own version of reality. We seem quite mad and not to be trusted.

Then their Autism is recognized and we change. We follow more consistent programmes of behaviour management. We stop punishing them for non-compliance. We lose our sense of powerlessness and frustration. We think we know what is going on now and are calmer and more predictable. We may start them on a course of medication or a special diet or visit a therapist. We begin to lose our own guilt and anger and no longer project them subconsciously onto our offspring. And they improve. Surprise! Surprise! They may still be autistic but their autism is no longer so disabling and we are able to enjoy our children and teach them to enjoy us.

Estee has just posted an excellent piece on The Economy of Pity. I was particularly struck by her reference to Dr Buxbaum and the possibility of a prenatal genetic test for autism. There is more on this in her earlier piece, Autism and Paradox.

If advances in genetic understanding do see off the biomedical curebies this creates a new set of problems. The curebies have already created a situation in which autism is seen as a devastating disorder. Severe expression of autistic difficulties in childhood is presented as the norm for all autistics of whatever age. Early intervention in the form of ABA/IBI is being trumpeted as a medical necessity.To judge from media reports this picture is becoming the popular view. Prenatal testing will inevitably raise the question of abortion. If autism is so horrible why bring autistic children into the world?

By coincidence I received a newsletter from the Human Genetics Commission this week. I am a member of their Consultative Panel and they have just asked for my views on

Whether there should be a law to prevent genetic discrimination (for example, like there currently is for sex discrimination) ?

Whether you feel that such a law should exist, what should be included in the legislation and how could ‘genetic discrimination’ be captured?

Whether you can suggest other ways in which genetic discrimination could be tackled?

The government is also creating an electronic database of health care records. The Human Genetics Commision has asked me how I feel about genetic information being included in such records. They are concerned about access to this information by healthcare professionals, in particular “who […] should be able to access it and in what circumstances?” There is also the question of family history being included perhaps in a genogram and thus other family members’ medical history being available to healthcare professionals who look up an individual’s records.

Also this week I read an email on an autism list from a parent who was told by an educational psychologist that their son would never achieve his full potential because of his Asperger Syndrome!

I apologize that this is not a particularly coherent or polished entry. But I just felt the need to raise concerns about the impact of advances in genetic research coupled with persistent negative images of autism.

Parents in Britain do not trust the government’s pronouncements on MMR and autism in part because the government has lied to us about other matters like Weapons of Mass Destruction.

I got an even bigger surprise when I clicked the google ad next door offering single jabs. While offering single jabs Manchester Independent Family Doctors are at pains to point out that they,“understand the difficulty encountered by parents in deciding whether or not to have their child vaccinated with the MMR vaccine as recommended by the department of health. The weight of evidence supporting the safety of MMR is now rather large. The evidence in support of a link between MMR and Autism or Inflammatory Bowel Disease is very weak. We hope the research summary below will help parents reach an informed decision on choosing how their child will be vaccinated.”

They go on to describe 9 pro MMR studies and 4 anti MMR studies, three by Wakefield et al. and one by O’Leary.

Then, a final surprise. They add a footnote

“In March 2004, 10 co-authors of Dr Wakefield’s original paper published in the Lancet retracted their support for the original findings.”

My initial thought was what a good lot they are. They offer single vaccines to parents who would otherwise refuse to vaccinate while doing their best to persuade you that the MMR is safe. But can you have it both ways? What about the parents who cannot afford their private clinic but still refuse the MMR, in part because they see middle class parents queuing up foir the single jabs and think there must be something to the MMR/autism connection after all.

Doctors are trained to make clinical judgements. It is their job. If MMR is the best option how ethical is it to take money from parents while providing a second best option for their children? I am not having a swipe here. This is a difficult question and one that will arise more and more as patients dispute professional matters with clinicians.